I am struggling so much with the pain of inflammatory arthritis and finding a drug which will help without b******** up my immune system with regard to the bronchiectasis.
I have tried hydroxycloriquin and they gave me migraine. For the last two weeks I have had a break from the troublesome HI and so started with sulphasalazine. I felt very wheezy on these and my stomach was so sore and raw it radiated up in my chest and I have been struggling to walk around because of the effects of the drugs and with the pain of the arth.
I am so concerned to try any more DMARDS eg methotrexate with regard to my lungs.
The pain has me waking up about every hour or so when I need to turn in bed and then I have to sit up to do so.
I am wondering if anyone has found anything which has worked for them. I am conerned the only answer will be steroids.
Any advice or experience will be appreciated.
With love
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can really help with the lungs, as don't have that combination - but doesn't sound much fun! but are you on a stomach protector to help you manage the impact of the drugs on your stomach lining? if not, that could help you tolerate the drugs better?
And there are quite a range of drugs, even before you get to the biologics, so your rheumy may well be able to suggest another that has less risk to your lungs? To me it would seem worth trying other things, as I too am not keen to rely on steroids - fine for a short break, but not for long term use. although I guess you have a steroid inhaler anyway for the lungs?
anyway, hope you manage to get to discuss other options, as sounds miserable. even if just muscle relaxants to helixhelix you sleep better - so at least one part of your day wouldbe less uncomfortable... Polly
Thank you for your reply Polly. Yes I do take a ppi and a steroid inhaler and have done for some time, during which time I have had inflamed ulcerated small bowel. The lungs I can manage (in the main, until it bites me on the bum and as I am colonised with Haemophillus Influenzaea that's pretty frequent) I have had bronch for 64 years, But I get on with getting a sample in and starting an antibiotic of choice, up the nebulising and physiotherapy. What other drugs are less of a problem to the lungs? I have app to see rheumy and my guess is she will want me to try Mtxt. From what I have heard this is quite a potent immuno suppresent. Feel my lungs need all the help from my immune system they can get. It seems like the ultimate betrayal that your own body's defences turn on you. Mind my immune system has had to work overtime for a very long time. I have difficulty seeing how DMARDs can work as I am supposed to stop them when I get an infection. Well as I understand it it takes a while for them to build up to be of benefit - well I would have to stop them loads due to chest infections.
I do wish sometimes the consultants would take a holistic approach. My respiratory consultant mentioned susphasalazine lung when I mentioned my rheumy wanted me to go on it and my gp (knowing my stomach is now delicate and I have IBS) said they are a bit hard on the stomach. NSAIDs led me to GI. Aaaagh!!!
oh dear, yes I can quite see why you're nervous about an immunosuppressant. i'm no doctor, but from what I've read that leaves you with Lefluonamide (Arava) and Gold. I'm possiblly going to go on Lef soon, but apparently it's best alongside a low dose of MTX. But it does seem to be effective, and has less immunosuppressant effects. There is a woman on HU (Summer) who's on Injectable Gold, having tried loads of other things, and seems to work for her. An old fashioned treatment, but that doesn't mean it's not useful. So you could discuss those with your rheumy? Good luck, Polly
hi yes in that person its not too bad it does take a while to work!!, they do however recommend chest xrays even with gold x
I wonder if some of the Biologics would also be a problem re your lungs? I don't know enough about them I'm afraid but worth researching if you don't either. I don't understand why your rheumy and GP aren't working together to give you options on drugs that won't harm your lungs so much? Surely with your medical history they wouldn't expect you to go near MTX for example - you have to have a clean chest x-ray to even start it? Poor you it sounds like a really hard path you've been forced on to and I do hope your doctors can resolve it with a better drug that suits you well and works for the RA too. Tilda xx
Tney also affect immune system, and have higher risk of infections.....
Oh okay forget that then - I just wondered if they all did. I was also thinking that there is a treatment system used in some parts of the world which involves taking antibiotics instead of DMARDs - maybe you are trying this already as you mention being on antibiotic but this method of treatment is a long term one. Don't know much about it except that some people swear by it as a better way to go for RA sufferers and I read about it once online. It has a name as a method but I can't tell you what anymore. Worth some research? Tilda xx
Yes I have just looked this up and it's called the Brown theory - Sorryif this link doesn't work I'm using my iPhone so it's harder to paste etc. roadback.org/index.cfm/fuse...
Not sure why it's not used more often as an alternative to DMARD approach here but it sounds to me as if it might be the way to go for you - sorry if you've tried it already but it sounds less aggressive and would maybe be more effective in your case? Hope this is helpful sorry if not. Tilda x
That's fascinating, I've got references to this theory in some of my American RA books but I'd never really followed it up. I wonder whether it's used much in UK? Px
thanks Lorraine, that was interesting. Tho' I had to laugh at the phrase that "side effects were minimal and mainly involved gastrointestinal upset and dizziness". Only someone who hasn't experienced how truly awful it is to feel like that all the time could dismiss these effects so casually!
Polly - Are you saying Biologics effect the immune system and have a higher risk of infection than do DMARDS? I am going to look up Lef, so thank you. However I note you say it is best taken with Methxt aaaargh! Will also look up Gold. (I only like white gold mind)! Oh I so agree with you re their trivialising the side effects of gastrointestinal upset and dizziness.
Tilda - Absolutely agree with you re GP and rheumy - in fact I think my resp cons should also be involved. I don't think they like treading on each other's toes, but as they all say I am 'complex' it would make sense to me for them to have a discussion. A holistic appreach.
Tilda and Lorraine - Thank you also for the links re Minocycline. I found this to be very interesting indeed. Many bronchiectatics are on prophylactic antibiotics - usually Azithromycin 3 days a week or in some cases 1 a day. I never wanted to go down this road, although I did agree to give it a try as many bronchs sware by them. However I had such dreadful stomach pains and nausea I stopped them. I used to be able to take Tetracycline when I was younger, but nowadays I am so nauseous with them. Usually the same with the mycins, although I am presently taking Clarithromycin prolonged release and so far I am fine with them. On reading the links I thought it would be the answer if I could tolerate Minocycline, however I am concerned that it doesn't stop the progression rate.
Seeing rheumy tomorrow.
Thank you so much again for your input. It is very sweet of you to take time to reply, especially so as it doesn't sound as if you have the lung probs, but your desire to help and kindness shines through.
Let us know how you get on - it's interesting to understand more about how different people are treated, and I think the more I know about this disease the better I'll manage it (and manage my rheumy!)
As you know, all drugs have pros and cons. Biologics sometimes seem to be presented as a wonder drug for us, and I think for some people they are, and many people on here who are on them seem to say that they feel more "gentle", wheras MTX feels like a thug that flattens everything in its path. But there are downsides too, and a slightly higher risk of infections does seem to be the main one of most of the Biologics. Probably ok for people with reasonable underlying health, and an acceptale risk to take, but could be more of a concern for you? Hope you find something. Polly
I went to see rheumy with a heavy heart dreading whichever one it was would urge me to try mtx. Having heard what happended with the sulph he decided DMARDs were defo not for me. I can't tell you how relieved I was initially. He is a very upbeat character and suggested we try Celebrex for the time being. He knows I have been told by GI not to take NSAI but stated they had an inbuilt stomach protector. It was only later I realised I had been on them before and had stopped them but my brain let me down and I couldn't remember why!!! I just remember reading an article about a possible link with heart disease, which runs in my family, so maybe that's why I stopped them. Not tried them yet. Up to here with drugs but will give them a go. My main concern is that they do not halt progression.
I think initially both rheumy's found my reluctance to start the hydroxy and the sulpha as me being a little difficult. Nothing could be further from the truth. I couldn't start one because I had surgery at the melonoma clinic on my face and the pathology came back with some cells remaining in the margins. I had to put a cream on which latches onto the rogue cells and your immune system then attacks them. So that was for 13 weeks and my imm sys had to be tip top. Then this year the haemophylus influenzae colonisation - pretty conststant infections. On my last visit she did say 'you have a lot to cope with' and I think they have softened their approach and I feel they understand much more. I forgot to mention the ab Minocycline. Well maybe one for the future if Cel doesn't work out for me.
He is also referring me to a physio for the pain, mainly in my lower back and neck at the mo. Hopefully that will help.
Just want to thank you all so much again for your combined effort to come up with solutions to my probs. You are indeed lovely lovely peeps. I hope you are all at your optimum best.
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